Motherfucking MS
On January 20, 2011, I will have lived fifty-nine years, and I still have so much to think about and so much to do and so much to come to terms with. I don't feel like a woman almost sixty years of age. When I was a kid growing up, I thought sixty was old. My grandparents died in their sixties, and Mom was sixty-six when she passed on.
Going to therapy once a week with Dr. Cinzia has given me a taste of optimism and has lessened my fear of this dreadful disease, Multiple Sclerosis, and my fear of losing even more of my powers and control. I had lost sight of my real self by claiming my disability as the totality of who and what I am and as a result, I had become a victim. I had lost sight of the fact that my uncontrollable body is just the house that my spirit lives in and is a vessel for me to learn and grow in. How far I have come in my journey and how very much further I have yet to go!
When I first came to Texas, I worked as a receptionist. I was always waiting for the other shoe to drop, for the day when I could no longer walk, because I knew my body was weakening, and the MS was getting worse. I tried to hide it, but the stress of hiding it came at a terrible cost. I was exhausted all the time, not just from the MS itself, but from thinking constantly about how to do what I needed to do without anyone knowing how much weaker I was getting physically and how much more stressed I was getting mentally. I fell so many times and had to have coworkers and even customers help me get back on my feet; they had to pick me up and help me steady myself with the cane I was using at the time. I got up with a smile, telling everybody I was okay and acting as though I was taking it all in stride.
Many of those times, I would go into the bathroom or into my car and cry from the humiliation of it and the fear of not knowing how much longer I could hold on. Seeing the looks of concern and pity in their eyes was awful, so I got up and moved on, trying to keep my fear and suffering inside. I stuffed it deeper and deeper, never admitting to anyone what I was really feeling or what was really going on. I could not admit my fear and loathed the thought of other people thinking that I was weak and pitiful. I hated the word disabled. I wanted everyone to see me as courageous, as a woman who went on no matter what. But inside, I was drowning; I was devastated. I felt weak and tired from doing my damndest to hide what was really going on. I felt that I was making a fool out of myself over and over again.
I remember one time being in the owner's office with my supervisor; we were talking about something or other, and I peed in my pants as I was standing there right in front of them. I was humiliated and just wanted to die because I couldn't stop it. I had no control. I was just thankful I had on dark pants. I don't think they even noticed, but I'm sure I left a wet spot on the carpet. The look on my face must have been a mixture of horror from the possibility that they would notice and disgust with myself for not being able to control my own body. I thereby fumbled my words and probably sounded like a jerk. I slithered out of there as best I could with my cane, my legs shaking and my arms straining with the effort of holding myself up for so long, just hoping that I wouldn't fall right there in the owner's office.. I felt so weak and so terribly ashamed. I went to the bathroom and got myself together before I went back to work at my desk, where I sat pretending that everything was just fine.
I've learned so many new ways to handle things along the way that if I'd known then what I know now, I would have saved myself untold horrors and many dreadful, fearful incidences --far too many to count.
At one point, I had an intestinal infection that went on for months. I thought it was MS related, but it just kept getting worse and worse. My good friend Keith finally convinced me to see a doctor. After several prescriptions for antibiotics, which caused unbearable nightmares that allowed me very little sleep, I finally got that behind me. However, more traumatizing humiliation that I find it hard to believe I got through followed. I had uncontrollable diarrhea at work. I often had to call for backup to take my place at the reception desk, but sometimes, my replacement would take too long and I would have to shove paper towels into my pants so I wouldn't shit on my office chair.
You just never know how MS will affect you from one moment to the next. One morning, as I was driving up to my work building, I became extremely dizzy and I hit the gas pedal instead of the brake and crashed into the metal rail in front of the plate-glass doors. If the steel railing had not been there, I would've gone through the plate-glass doors and right into the building. The rail was bent to hell. My car was a mess, the front bumper in pieces and broken headlight bits all over the place. I hobbled around and picked up as many pieces as I could. I put them in my backseat. I backed up, doing even more damage in the process, and then I tried to drive the car, but I did not get very far. Fortunately, Keith was working nearby, so I called him in a panic, and he came and got me. He helped me get a tow truck to get my car into a body shop. I had a rental for two weeks.
I also had to explain to everyone at work how it had happened. The front of the building was a mess. I still can't believe I did that. Everybody was great about it, but my confidence was shattered yet again.
Fucking MS.